Conference Friday focuses on celiac disease

Avera St. Luke's Education Center hosts look into gluten intolerance

Avera St. Luke's Education Center hosts look into gluten intolerance

September 19, 2007|By Gretchen Mayer, American News Writer

To many people, the word "Celiac Sprue" may sound like a pretty name for a woman, but for those suffering from the disease it's anything but. Celiac disease affects about 1 in 130 people and is a reaction to food proteins found in wheat, rye, oats and barley. Eating these foods damages the lining of the small intestine, causing a number of physical symptoms including abdominal cramping, anemia, fatigue, mouth sores, joint pain and weight loss. On Friday from 9:30 a.m. to 3:30 p.m. there will be a Celiac Disease Gluten Intolerance Conference sponsored by Avera St. Luke's Hospital and the Aberdeen Celiac Support Group. It will take place at the Avera St. Luke's Education Center, 709 Sixth Ave. S.E. Registration is $15 for one person or $20 for two people in the same family. A gluten-free lunch is included with the registration. The program is for children and adults previously diagnosed, those who have been recently diagnosed or anyone who wants to learn more about the disease. Speakers for the conference are dietician Cathy Birch-Deics of MedCenter One Health Systems in Bismarck, N.D., formerly of Aberdeen, and Dr. Cristina Hill-Jensen of Avera McKennan's Digestive Disease Institute in Sioux Falls. Trenton Aman, 14, of Leola, was 7 years old when he was diagnosed with gluten intolerance. It started out with painful stomachaches in the morning that would abate at around 10:30 a.m. "I had bad headaches, my legs hurt and my joints hurt," he said. Trenton started getting eczema and his parents, Nancy and Allen Aman, decided to take him to La Crosse, Wis., where he was finally diagnosed. "I started feeling better about a week after I went on the diet," he said. For a teenager with an active life, avoiding gluten can be a tremendous challenge. While his friends can feast on pizza and burgers, Aman has to avoid those foods. "At McDonald's I'll have the largest order of fries you can get and a sundae," he said. "The hardest part, other than finding places to eat, is resisting the food." Rice is acceptable, so for breakfast Aman, who used to love to eat bagels, now eats Fruity or Cocoa Pebbles. "A couple years back I brought my lunch to school, but now they just let me have extra soup and meat instead," he said. While celiac disease and gluten intolerance have an inheritability factor, neither Aman nor his mother, Nancy, are aware of anyone else in the family who has it. The Internet was a blessing to Nancy as she did a lot of research on gluten intolerance after Trenton was diagnosed. "You can call the companies and they will send out a products list," she said. "In the bigger cities, they'll have a section of gluten-free foods or you can order things over the Internet,” she said. "When cooking, you have to be careful of cross-contamination. You can't store things with flour in the same cabinet." Michael Jurgens, coordinator of the local support group, was diagnosed about 20 years ago when he was age 40. According to the Celiac Sprue Association, diagnosis can happen at any age, but the most common age is 50. "I had gastrointestinal problems," said Jurgens. His doctor removed everything in his diet until he was eating only meat, potatoes and vegetables and then slowly added in other foods. "He started by adding in milk to make sure I wasn't lactose intolerant," said Jurgens. "Then we finally found out what I had. These days you can just take a simple blood test." Since Jurgens was diagnosed with adult-onset celiac disease, more products catering to the gluten-intolerant diet have hit the market. "I lived on rice cakes for a long time," said Jurgens. "They're not too bad if you put enough stuff on them but today I can barely look at a rice cake. Now you can buy crackers, cookies, bread and even brownies. They're more expensive, though." Airlines will even prepare a special meal if the flier requests it at the time of booking. The local support group provides information-sharing, recipes and a gluten-free potluck lunch. For more information about the conference, call (605) 622-5588. For info about the support group, contact Jurgens at 226-3865.